Doing Public Dis/ability History – The Touchdown Exhibition at the Art and Exhibition Hall of the Federal Republic of Germany in Bonn | 29 Oct. 2016 – 12 Mar. 2017

By Thea Jacob

The past and present of individuals with Down syndrome – their societal and historical stigmatization as "impaired" on the basis of apparent visible and/or cognitive effects of the variance in their sets of chromosomes – is almost unknown in our society, even though one in every six hundred pregnancies worldwide involves an embryo with trisomy 21. The organizers of the TOUCHDOWN exhibition work against this invisibility. Their main subject is the cultural history of individuals with Down syndrome; they follow the traces of these individuals in both historical and contemporary societies and exhibit historical artifacts, artwork and everyday objects by and/or about people with Down Syndrome.

Johanna von Schönfeld, Ohrenkuss edition „Superkräfte“ (Superpowers) 2013
© Martin Langhorst www.lichtbilderlanghorst.de

The organizers have chosen a prominent location to kick off the tour of their exhibition. Starting at the Art and Exhibition Hall of the Federal Republic of Germany in Bonn from 29 October 2016 to 12 March 2017, the exhibition will then be presented in different German cities. It originated within the framework of the participative research project TOUCHDOWN21. A team consisting of individuals with and without Down syndrome conceptualized the exhibition. With its "depth of content and vibrant diversity," the exhibition does not want to provide “ready answers,” but to "contribute to a lasting, more intelligent debate regarding societal diversity and participation."¹

Visitors can take part in a tandem tour three times per week and that can be booked as an addition for visitor groups. The tandem team consists of two individuals, one with Down syndrome, one without; in the preparation period both partners have worked intensely together and have developed a narrative for the guided tour. The tandem tours have been completely sold out since January 2017. Participants’ feedback has always been positive; visitors and tour guides usually end up getting into conversation with one another.

I have been observing the exhibition team’s efforts since summer 2016 as part of the research phase for my Master’s in Public History² at the Free University of Berlin. My final thesis will include the evaluation and analysis of the exhibition project with regard to its participatory working methods. Specifically, I would like to explore how the exhibition contributes to the fields of both Public History and Dis/ability History through its form and content.³

What are the theoretical assumptions and practical concerns of Dis/ability History implemented in the TOUCHDOWN exhibition? How do individuals with Down syndrome talk about themselves in the exhibition, and how are they being talked about by people without Down Syndrome? Below, I describe the collaboration of individuals with and without Down syndrome in preparing the exhibition as well as the exhibition itself, albeit briefly.

The Exhibit

Vincent Burmeister, illustration for the exhibition chapter “Today – Here and Now” 2016
© Kunst- und Ausstellungshalle der Bundesrepublik Deutschland GmbH

The framework of the exhibit is a fictional story devised by the TOUCHDOWN team: a spaceship with seven astronauts and one dog lands on the roof of the Art and Exhibition Hall in October 2016. This is the “Second Mission” from the planet kUMUSI, and all of the space travelers have Down syndrome. Once on Earth, they visit the descendants of planet kUMUSI’s “First Mission” and learn not only about the life of people with Down syndrome on Earth nowadays, but also about their history over the last 5.000 years. The exhibition presents the result of the Second Mission’s research and observations, and the trip’s log book accompanies the exhibition. Artist Vincent Burmeister presents this background story as a comic. Cartoon figures drawn on the walls guide visitors through the exhibition, as well as through the various sections of the accompanying book.⁴ Burmeister maintained close contact with the TOUCHDOWN team while he was developing the characters. The strong, tough, and self-willed figures are curious and eager to learn and have minds of their own with specific world-views and judgments about what they see and perceive.⁵

The exhibition begins in the foyer of the Art and Exhibition Hall with the landing of the Second Mission on the roof. The Second Mission characters are introduced on the way into the main exhibition space.
The second room, entitled “Today – Here and Now,” addresses the everyday-lives of individuals with Down syndrome. How do they live? What sorts of jobs do they have? What kind of music do they listen to? How do they deal with grief? Are they in love? What do they aspire to? What do they find annoying? The team-members who played a central part in the conceptualization of this room have very different answers to these questions. Individuals with Down syndrome provided most of the objects and artwork on display here and also composed the corresponding texts.
The third room (“The Invisible – Seeking Traces in the Past”) contains displays that might represent forms of existence of individuals with trisomy 21 over the past 3.500 years. But historical discovery has to remain speculative.
The fourth room is dedicated to the life and work of John Langdon-Down (“The Big Show – John Langdon-Down.”) In the 1860s, John Langdon-Down established in two institutions in England that provided a comprehensive therapeutic support system for individuals with cognitive differences. “Down syndrome” is named after him. Some of the individuals with Down syndrome in the TOUCHDOWN team appreciate and value his work, especially his respectful interaction with individuals with Down syndrome. This room also addresses the evolution of the term “Mongolism” and clarifies why individuals both with and without Down syndrome reject it.

The murder of individuals with physical and/or psychological differences during the Nazi era is the theme of the fifth room of the exhibition (“In Semi-Darkness – The Extermination”). According to the Nazi classification system, individuals with Down syndrome were declared as “unworthy life” and either sterilized by force (starting in 1934) or systematically murdered (starting in 1939).

TOUCHDOWN team members with Down syndrome think it is important to discuss this topic during their guided tours. Because some of the concerned do not want to speak themselves, they deliberately allow their tandem partners to lead the discussions. The tandem team prepares their visitors for this exhibition room and offers them the choice to decide if they would like to enter the room or not.

The sixth room of the exhibition presents topics from the field of research, health, and family (“Research – I am what I am”). In this room, prenatal diagnosis is explained as well as the decisions pregnant women are confronted with when they are carrying a fetus with trisomy 21. In the course of preparations for the exhibition, the TOUCHDOWN team participated in a workshop on the topic of abortion. Individuals with Down syndrome developed and produced the displays on view in this section of the exhibition.

The seventh and last room, entitled “The Discussion – Go or Stay?” provides visitors with an opportunity to evaluate their experiences during their tour through the exhibition. The exhibition protagonists – both the individuals with Down syndrome on Earth and the space travelers – summarize their arguments in a radio play installation, leaving the conclusion to the story open-ended. Visitors are invited to participate in the discussion by writing their opinions on pieces of paper and putting them in a box in the middle of the room.

Conclusion

The research questions that I raised at the beginning of this article can only be answered briefly here. My field research has shown that collaboration between individuals with and without Down syndrome, both in the preparation of the exhibition and in the exhibits themselves, can be successful under three conditions: first, people have to deal respectfully with each other, second, they must have enough time to work on the content together, and third, they have to develop a common narrative for the guided tours. In the case of this specific project, the participants had already developed strong relationships with one another over years of collaborative work for the “Ohrenkuss”-magazine.⁶ On the editorial staff everyone is treated as different, but equal, a principle that was also vital for the success of the TOUCHDOWN exhibition. The “Ohrenkuss” editorial staff also tested assisted⁷ work settings before this form was expanded during the exhibition preparations. Individuals with Down syndrome get more than only a chance to speak in the exhibition. Rather, they can present their own topics, and their everyday lives are portrayed from their own perspectives. Persons speak as experts of their own situation. They have decided themselves how they want to be (re)presented and what they want to present. Participating experts without Down syndrome have also presented their research results to the TOUCHDOWN team as part of the exhibit development process. If pictures or objects utilized in the presentation were not explained in klarer Sprache (Clear Speech),⁸ these materials, texts, and artifacts were prepared and/or translated by assistants to make them understandable to everyone. Julia Bertmann, a member of the advisory board with Down syndrome, evaluated the comprehensibility of the exhibition, suggested changes and authorized the texts. All texts in the exhibition and its accompanying exhibition book are written in klarer Sprache and only in klarer Sprache, as is the website for the TOUCHDOWN21 research project.
History is going to be written:

“[…] as an emancipatory, participation-oriented project. Its protagonists’ guiding principle is to change societal views and practices so as to enable individuals with particular physical characteristics and health issues to enjoy full subject status and unlimited participation.”⁹

The organizers of the TOUCHDOWN exhibit dedicated themselves to this vision. Through their work, they attempted to deliver initial responses to the core questions¹⁰ of Dis/ability History as it concerns Down syndrome.
As the first exhibition of its kind in the German-speaking world, the TOUCHDOWN Exhibition did not just achieve an important milestone in the field of Public Disability History. It demonstrated that extensive research has to be done in order to deliver new insights into the past realities of individuals with Down syndrome.¹¹

Links

• www.touchdown21.info
• www.bundeskunsthalle.de/en/exhibitions/touchdown.html

Recommended Citation:
Thea Jacob (2017): Doing Public Dis/ability History – The Touchdown Exhibition at the Art and Exhibition Hall of the Federal Republic of Germany in Bonn | 29 Oct. 2016 – 12 Mar. 2017. In: Public Disability History 2 (2017) 5. 

Footnotes:
[1] Informational material for potential borrowers at the Touchdown exhibit, p. 1, as of February 2016 (in the author’s possession). Can’t insert comments in footnotes, so will just say that I think “For potential borrowers is super awkward and I would replace it with “available”^↩
[2] Public History is understood “as history for the public,” “history in public,” or “applied history.” The term is used both in the sense of the American pioneers of the field, who intended it to refer to history done by non-academics in public spaces, as well as “the teaching and analysis of the dissemination of historical knowledge to a wider public.” See: Zündorf, Irmgard: “Zeitgeschichte und Public History, Version: 1.0.” In: Docupedia-Zeitgeschichte, 11 Feb. 2010, URL: https://docupedia.de/zg/Public_History^↩
[3] I have utilized the methods of “participatory observation” from the field of Ethnology as the basis for my own research. I attended TOUCHDOWN21 team meetings, events, and tours and took field notes that will serve as the foundation for comprehensive records that will in turn serve as my main sources. ^↩
[4] Kunst- und Ausstellungshalle der Bundesrepublik Deutschland, Bonn: TOUCHDOWN. Die Geschichte des Down-Syndroms, Bonn 2016.^↩
[5] See Kunst- und Ausstellungshalle der Bundesrepublik Deutschland, Bonn: TOUCHDOWN. Die Geschichte des Down-Syndroms, Bonn 2016, p. 10-33.^↩
[6] “Ohrenkuss – da rein, da raus” (Ear Kiss – Goes In There, Goes Out There) is a print magazine written by people with Down syndrome. It was started in Bonn in 1998 by Dr. Katja de Bragança. Today the magazine employs individuals nationwide. See http://ohrenkuss.de/projekt/historie and http://ohrenkuss.de/projekt/uber-ohrenkuss^↩
[7] See Kunst- und Ausstellungshalle der Bundesrepublik Deutschland, Bonn (Hrsg.): TOUCHDOWN. Die Geschichte des Down-Syndroms, Bonn 2016, p. 8: “In this book, individuals with Down syndrome share their viewpoints with the world [Author’s note: they do this in the exhibition itself as well]. They talk about their lives and their day-to-day routines here and now, and they express their wishes for the future. They do this independently and with self-confidence. This required support. […] Numerous assistants supported the individuals with Down syndrome and opened up opportunities for them. They supported the processes without controlling or influencing them.“^↩
[8] What is Clear Speech? Clear text is simply comfortable for everyone. Another important difference is that Clear Speech utilizes foreign words whenever they are necessary. […] The technical terms that are needed for a text are explained and then used consistently throughout the text. […] There is one more point that is important for clear speech: only a person who is interested in a topic can understand a text written in clear speech.”^↩
[9] Waldschmidt, Anne/Schneider, Werner: “Disability Studies und Soziologie der Behinderung. Kultursoziologische Grenzgänge – eine Einführung.” In: Disability Studies, Kultursoziologie und Soziologie der Behinderung. Erkundungen in einem neuen Forschungsfeld. Bielefeld 2007, p. 9-28, here on p. 13.^↩
[10] “How is the ‘Different’ distinguished from the ‘Normal’? Which scholarly discussions, political and social state interventions, and institutional control mechanisms determine the historical development process of a category like disability? […] How does mainstream society construct its normality in and through the design of a particular iconography of differences?” See Bösl, Elsbeth/Klein, Anne/Waldschmidt, Anne: Disability History: Einleitung, in: Disability History. Konstruktionen von Behinderung in der Geschichte. Eine Einführung. Bielefeld 2010, p. 7-10, here on p. 8. As described above, this pertains above all to rooms three, four, and five of the exhibition, which specifically address historical topics.^↩
[11] An in-depth analysis of the R179 patient files in the Federal Archives in Berlin with regard to the personal histories and the history of the persecution of individuals with Down syndrome during the Nazi era would also be worthwhile. Further ancient-DNA-analysis could also provide insight into the lives of individuals with Down syndrome in the very distant past.^↩

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Old medical records as historical sources - an accessible film

By Bettina Alavi and Eva Franz

Located at the psychiatric clinic in Heidelberg is the internationally known Collection Prinzhorn, in which works of mentally ill artists are archived and exhibited.¹ Its founder, psychiatrist Hans Prinzhorn (1866-1933), laid the foundations for the study of art and art therapy in psychiatric context. From 1910-1921 he was hired by the Heidelberg Psychiatric University Clinic to develop an existing small art collection made by mentally ill persons. His book, "Bildnerei der Geisteskranken" ("Sculpture of the Mentally Ill"), was received by artists such as Max Ernst. Today's scholarly discussion of Prinzhorn's artists, in addition to dealing with the artistic products, also applies to the biography of the patients. The reconstruction of their life stories is based on historical medical records.²

Historical medical records are sources that were primarily written about the patient: the doctor noted symptoms, diagnosis, and treatment. Sometimes there were also letters from relatives. A further part consisted of official documents such as instructions, invoices, etc. Only in exceptional cases were letters, drawings, or pictures by the patient included. Nevertheless, the course of the patient's life can at times be at least partly traced. In addition, they provide insights into the historical background such as the roles of patients and caregivers, as well as insurance issues and much more.

With the demand for inclusion in education and with the development of disability history, the question arises about the provision of adequately prepared knowledge about mental illnesses and their treatment in history. Accessibility for all is an important basic condition: both to the Collection Prinzhorn, and to the materials made for educational purposes in the museum. The accessible preparation of these materials is the focus of a project in history didactics. Teacher training students at the University of Education in Heidelberg created accessible film sequences,³ which elaborate aspects of the history of psychiatry around 1900 in the context of the Collection Prinzhorn for a diverse group.

A product of the project is the film sequence "Alte Krankenakten als Quellen" ("Old medical records as historical sources").⁴ In the section shown here, the notion of historical source is clarified using an example of a medical record. Accessibility is enhanced through linear narration. This narration consists of language and visualization, which additionally structures the section and explains the content. The language is based on an everyday comprehensible vocabulary and follows the rules of Leichte Sprache (German version of Simple English).⁵ The moderation is calm, the articulation is clear. The source work is equated with detective work; a detective is repeatedly used as stylistic means. This visualization loosens the content humorously but not ironically. The lack of background music is intended and mental breaks are built in.

Making a film accessible is more than just methodological adjustments. It demands a deliberate reduction of the complexity of content through didactic elementarization.⁶ This concept is based on theories originated in special education. Leading questions for the process of elementarization are: What are the basic structures of the subject? What do people experience? And what is important from a social perspective? The elaboration of these "elementary structures", "elementary experiences" and "elementary basic principles of life" serve to elucidate the core of the matter.⁷

In the context of history didactics, the film sequence corresponds to the method of inquiry-based learning, as the detective work provides a method of identifying a historical source and shows ways to use it: Asking questions to a historical source is explicated. This is regarded as an important competence on the path to historical awareness.⁸

Recommended Citation:
Bettina Alavi & Eva Franz (2017): Old medical records as historical sources - an accessible film. In: Public Disability History 2 (2017) 4.

Footnotes:
[1] www.prinzhorn.ukl-hd.de/index.php?id=84, visited 2/22/2017.^↩
[2] Fuchs, Petra (2010): "Sei doch dich selbst". Krankenakten als historische Quellen von Subjektivität im Kontext der Disability History. In: Elsbeth Bösl, Anne Klein, Anne Waldschmidt (Hrsg.): Disability History. Konstruktion von Behinderung in der Geschichte. Eine Einführung. Bielefeld, 105-123^↩
[3] Vision Kino gGmbh (Hrsg.) (2013): Praxisleitfaden Inklusion und Film. Methoden, Tipps und Informationen für eine inklusive Filmbildung. Berlin: www.visionkino.de/publikationen/leitfaeden/praxisleitfaden-inklusion-und-film, visited 2/22/2017. ^↩
[4] The film was made by Anna Güse and Alena Roberts in Alavi’s and Franz’ seminar "Disability History" in winter semester 2016/17.^↩
[5] www.leichtesprache.org, visited 2/22/2017.^↩
[6] Lamers, Wolfgang/Heinen, Norbert (2006): Bildung mit ForMat – Impulse für eine veränderte Unterrichtspraxis mit Schülerinnen und Schülern mit (schwerer) Behinderung. In: D. Laubenstein, W. Lamers, N. Heinen (Hrsg.): Basale Stimulation kritisch – konstruktiv. Düsseldorf, 141-205.^↩
[7] Seitz, Simone (2006): Inklusive Didaktik: Die Frage nach dem Kern der Sache. Zeitschrift für Inklusion www.inklusion-online.net/index.php/inklusion-online/article/view/184, visited 2/22/2017. ^↩
[8] Reeken, Dietmar von (2014): Historisches Lehren und Lernen. In. A. Hartinger, K. Lange (Hrsg.): Sachunterrichtsdidaktik für die Grundschule. Berlin, 98-116. ^↩

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Ubuntu and ways of being in the world: Listening to my colleagues describe Southern African disability history and theory

By Maria Berghs

I am not a historian but I got curious about neglected histories linked to African theory and models of disability when I was working with my colleagues from Zimbabwe - Dr. Tsitsi Chataika and the disabled disability rights activists Kudzai Shava and Abraham Mateta. We were collaborating on a book chapter for an edited collection entitled Advocacy in Conflict: Critical Perspectives on Transnational Advocacy.¹ As a group, we were trying to elucidate some of the transnational and national struggles we had seen in our own work in Sierra Leone and Zimbabwe around advocacy for disability rights. While we were writing together, my colleagues stated that they had an understanding of disability rights linked to South African understandings of Ubuntu. Ubuntu embodies a Southern African humanist and collective ethical philosophy. It states that our way of being human is connected to the humanness of other people. My colleagues also located this philosophy within their own histories of decolonisation and disability activism as a practice. I had come across the concept of ubuntu in terms of South African transitional justice and reconciliation but I had no idea what they meant when correlating it to ‘disability’ or ‘rights’.

In order to engage in a more respectful cross-cultural dialogue and collaboration, I thought I should learn about what ubuntu means philosophically, especially in terms of epistemology and ontology of disability.² An engagement with disability studies already requires concepts and frameworks that are relegated by mainstream academia. Additionally, there is also the work of understanding what decolonisation now implies and rethinking (dis)ableism through collaborative but accessible work. Thinking about why decolonisation has become so pertinent again, especially when it comes to Southern theory and the turn to the South,³ working through the real world implications of such ideas is usually where discourses around disability tend to stop and academics (usually working alone) cite ‘cultural model’. I think ‘culture’ now functions as a way to silence or put ‘disability‘ in particular academic boxes on paper. For instance, there is almost a tick-box way of writing anthropologically where you sprinkle your essay with some descriptive concepts, definitions of impairment or proverbs linked to disability and then call it ‘indigenous’ or ‘cultural’. I am guilty of this too. Yet, what is often referred to as ‘cultural’ is a specific way of presently being in the world that is informed by a past. Often those ‘cultural’ models also stop at our Western understandings of what ‘disability’ physically embodies because most of our work uses Western philosophy.

South African social rights activist and Anglican bishop Desmond Tutu explains Ubuntu (English).

Ubuntu is not a ‘cultural model’ but a social ethics which describes how a person is a person through their relationships with other people. I am through the humanness and diversity of the other. The expression people use in the South African Zulu language is akin to: I am because we are. In South Africa, what it means to be human and our relatedness to others also encompasses the spiritual relationships to the ancestors and land. The concept of diversity is thus wider than just biological and becomes correlated to relationship between the spiritual and ecological. This has repercussions for understanding impairment as not just biologically located but as cognitive, sensory, mental, physical and (eco) spiritual.

Yet, ubuntu is also a ‘normative claim’⁴ about how we should live and thus tells us something about the way in which disablement occurs because of lack of respect for the diversity of what it means to be human. Impairment can also be reactionary to a history of colonisation and violence. That’s why I think some of the most exciting work currently, especially using ethnographic methods, is being done by historians - almost excavating this history.⁵ Thus, in a second step, I wondered how you would view disability as linked to ubuntu in terms of restorative ethical practices to ensure the diversity of what means to be human. How did people understand a struggle for this shared humanity in terms of history of decolonisation? How does it link to history of activism in South Africa and other African countries? What is the link to the history of advocacy around disability? Do we have to think about ubuntu as an African model of disability?

Let’s be clear. I am not an activist either but I am interested in the sociology of disability and rights. The connections between the different theories or models and the practices they engender. During my PhD in sociology and social policy, I was very lucky that one of my supervisors was the British academic and disability activist Professor Colin Barnes, quite a few of my international colleagues who I studied with at the University of Leeds⁶ consider themselves activists and many of my research participants engage in advocacy around disability issues but don’t call themselves activists.

One of Colin Barnes’ heroes was Vic Finkelstein and so I read about his life history. That’s how I learned about the South African anti-apartheid connection to the origins of British activism around disability. I thus also started reading about differing forms of African activism. What’s nice about Vic Finkelstein’s work is that he doesn’t take ‘models’ too seriously⁷ and understands that they are linked to particular histories, people and places. For an activist like Finkelstein, you can call the model what you want, as long as it ensures future societal emancipation. His life and work in the diaspora also call into question how Western imaginaries construct notions such as ‘global south’ and ‘disability’. Thus working backwards, it makes sense to ask how and if our past societal emancipations or activisms are linked to particular African philosophies and how those affect models of disability.

Despite having undertaken such research to understand the importance of ubuntu to my colleagues, I had to write a paper about it in my spare time. More and more, the rigid rules of academia mean if you want to climb the career ladder, you are advised to stop publishing in places like African Journal of Disability and on topics that are marginalised. This is the complete opposite message you get within disability studies where increasing diversity, collaborating with your disabled colleagues, contributing to knowledge and ensuring accessibility of your research, especially in African context, is applauded. Moreover, researching and critically questioning why some theories and histories are being neglected is to be prioritised, especially if those insights come from people we work with. Those are also active processes of decolonisation that we need to engage in and shifts in our thinking about whose voices and perspectives matter.

Recommended Citation:
Maria Berghs (2017): Ubuntu and ways of being in the world: Listening to my colleagues describe Southern African disability history and theory. In: Public Disability History 2 (2017) 3.
Footnotes:
[1] Chataika, T., Berghs, M., Mateta, A. & Shava, K. 2015. ‘From whose perspective anyway? The quest for African disability rights activism’, in A. De Waal (ed.), Reclaiming activism: Western advocacy in contention, pp. 187–211, Zed Books, London.^↩
[2] Berghs, M. (2017). Practices and discourses of ubuntu: Implications for an African model of disability?. African Journal of Disability, 6, 8.^↩
[3] Comaroff, J., & Comaroff, J. L. (2015). Theory from the South: Or, how Euro-America is evolving toward Africa. London and New York: Routledge.^↩
[4] Van der Merwe, W.L. (1996) Philosophy and the multi-cultural context of (post) apartheid South Africa. Ethical Perspectives. 3(2): 1-15.^↩
[5] See: Hunt, N. R. (2015). A Nervous State: Violence, Remedies, and Reverie in Colonial Congo. Durham, NC: Duke University Press.^↩
[6] For example, that’s how I met Kudzai Shava.^↩
[7] Finkelstein, V. 1996. “Modelling Disability.” Available at: http://disability-studies.leeds.ac.uk/files/library/finkelstein-modelling-disability.pdf (Accessed on 21st February 2017) ^↩

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Mediating Disability History to a broader audience: An Institutional Approach

by Sebastian Weinert

As Daniel Blackie pointed out recently on this blog, doing public disability history is an important, but sometimes challenging project.¹ In the last couple of months we had the great opportunity to test different ways to communicate the history of a foundation for people with disability to the public. By doing so we gathered some inspiring experiences we are happy to share with other disability historians.

Guido von Donnersmarck sourrounded
by war invalids in Berlin-Frohnau

8th May 2016 has been an important date for the Fürst Donnersmarck-Stiftung zu Berlin (FDST): Exactly 100 years ago – in the midst of World War I – Guido Graf Henckel Fürst von Donnersmarck established the foundation as a scientific research institute in Berlin. He was an Upper Silesian magnate and one of the richest persons in Prussia.² In August 1914 – shortly after the outbreak of the “Great War“ – he erected a military hospital at the heart of Berlin-Frohnau – an area near the German capital he had originally acquired for investment purposes. Two years later, von Donnersmarck decided to give his engagement for war invalids a permanent basis by bringing the FDST to life. The history of this institution was quite eventful. Due to several reasons the foundation’s mission to become a scientific research institute coping with the new injuries caused by modern weaponry never came into being. Not until the end of World War II the FDST started its actual work – with a pedagogic instead rather than medical or scientific approach. Eventually, the foundation grew to a sizable institution that provides support for people with disability with housing and leisure activities as well as the operation of two hotels in Rheinsberg and Bad Bevensen. The foundation furthermore runs the P.A.N. Centre for Post-Acute Neurorehabilitation in Berlin-Frohnau and is currently increasing its engagement for scientific research on the field of neurorehabilitation.

On the occasion of its 100th anniversary the management as well as the board of trustees decided to mediate the foundation’s history to a broader audience. Therefore a new Festschrift about the development of the organisation from 1916 until the recent days was commissioned. A similar project marked the occasion of the 75th anniversary 1991³, but things have changed during the last 25 years. Not only did the organisation itself undergo drastic structural changes during the last decades, but the historical interest in the history of people with disability has also clearly increased in the new millennium. Research in Disability History has provided a new backdrop, helping us to better understand the history of this particular institution.⁴ Thus it was time for a new comprehensive monograph of the foundation’s history. After about one year of research and writing the study “100 Jahre Fürst Donnersmarck-Stiftung 1916-2016“ was published on 7th May 2016.⁵

A gaze at a lecture in front of visitors of the Villa Donnersmarck in Berlin-Zehlendorf

But this didn’t mean that our goal of communicating the organisation’s past to a broader public was fulfilled. Since our target groups are considerably heterogeneous, ranging from people with multiple disabilities to our employees and even political or scientific stakeholders, we opted for a multi-level mediation process. In addition to the monograph we wrote an easy-to-read summary that first appeared in our magazine WIR and was later issued as a stand-alone booklet.⁶ Furthermore we curated an exhibition including plenty of audio-visual material and organised several lectures that aimed at various audiences. This means we spoke in front of an academic public, the guests of our hotels in Bad Bevensen and Rheinsberg as well as the visitors of our cultural center Villa Donnersmarck. In addition we conceived a special lecture for the clients with intellectual disabilities at our sheltered independent housing facility.

Last but not least we posted images and short texts using the hashtag #FDST100 on Facebook, Google+, and Twitter to remind the audience of important events that took place in the past. By doing so we managed to reach a considerable number of people from all parts of society. More than 700 people attended to the lectures and exhibition tours, the WIR is almost completely out of stock, and several employees, who all got a personalized copy of the Festschrift as gift, provided enthusiastic feedback about the book. The exhibition was shown in the Villa Donnersmarck, our two hotels and will be shown at our P.A.N. Centre for Post-Acute Neurorehabilitation. Furthermore the exhibition was on display during our anniversary celebration in the STATION-Berlin, which was attended by 1600 people.

The exhibition about the history
of the FDST at the STATION-Berlin

But what has this to do with doing public disability history? First of all the history of the FDST is part of the general history of people with disability. Since many of them receive support of organisations like the FDST or are at least in touch with them, their life is heavily affected by developments in the social sector. Thus by tracing down the history of the FDST we also provide valuable insights in the social attitude towards people with disability. And we show how economic, political or social transformations influence the work of a foundation like the FDST. On the other hand exploring and mediating our history had a second aim: By doing so we wanted to give everybody – people with disabilities, employees, scientists or the general public – the opportunity to inform themselves about our past. That means that we got in direct contact with people with disability – for example during our lectures. Thereby we had the chance to share opinions about the history of our organisation as well as of the situation of people with disability in 20th and 21th century Germany. In this way we offered our clients or guests with disability an access to their own history – an attempt to empower them as interpreters of disability history in their own rights. And by the way: Mediating the results of our research the way we did takes the demand of public historians seriously to restart getting in touch with a broad audience outside the scientific world.⁷ For us this was also one of several approaches to give everyone a chance to participate in our anniversary year – whether with or without a disability.

Doing disability history is challenging, but also enriching. In our case we understand the organisation’s history mainly as a historical resource that gives us orientation in the present as well as a chance for giving people with disability the opportunity to get in contact with us and learn more about the organisation and its past.

Recommended Citation:
Sebastian Weinert (2017): Mediating Disability History to a broader audience: An Institutional Approach. In: Public Disability History 2 (2017) 2.


Footnotes:
[1] See Blackie, Daniel: Doing Public Disability History, in: Public Disability History 1 (2016) 16. Online: http://www.public-disabilityhistory.org/2016/09/doing-public-disability-history.html.^↩
[2] See Manfred Rasch: Der Unternehmer Guido Henckel von Donnersmarck. Eine Skizze. Essen: Klartext 2016.^↩
[3] See Golka, Thomas/Wieder, Horst: Geschichte der Fürst Donnersmarck-Stiftung 1916-1991, Berlin: Selbstverlag 1991.^↩
[4] See e. g. Waldschmidt, Anne/Lingelbach, Gabriele (Hrsg.): Kontinuitäten, Zäsuren, Brüche? Lebenslagen von Menschen mit Behinderungen in der deutschen Zeitgeschichte, Frankfurt am Main: Campus 2016.^↩
[5] See Weinert, Sebastian: 100 Jahre Fürst Donnersmarck-Stiftung 1916-2016, Berlin: Selbstverlag 2016.^↩
[6] See Scharf, Bertold: Tagungsbericht: Kontinuitäten, Zäsuren, Brüche? Die Lebenslage von Menschen mit Behinderungen in Deutschland nach 1945: Periodisierungsfragen der deutschen Zeitgeschichte aus interdisziplinärer Perspektive, 20.03.2014 – 22.03.2014 Köln, in: H-Soz-Kult, 02.09.2014. Online: www.hsozkult.de/conferencereport/id/tagungsberichte-5520.^↩
[7] See WIR-Magazin (2016) 1. Online: http://www.fdst.de/w/files/wir_pdf/wir_2016_01_160208_final_tags.pdf.^↩

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The Future We Want: Demanding Rights for People with Disabilities during the Spanish Democratic Transition (∗)

By Mercedes del Cura

“Achieving 17 goals for the future we want” is the theme chosen in 2016 to celebrate the International Day of People with disabilities. The slogan reminds us of the gap that in spite of the great steps which have been made towards integration and recognition, still exists in creating a more inclusive and equitable world. A society in which people with disabilities will be able to decide about their lives, taking an active part in political processes and decisions that could affect them.

In the case of Spain, the political discourse during the democratic transition period built the foundations towards an inclusive future. Franco’s death in 1975 opened up public interest for intense social and political participation; social movements became an essential tool for building a democratic country¹. Concerning the stigmatisation of disability, a change of discourse and representation could be observed. Critical attitudes already existing in the last years of the Franco regime became more visible². Aware of the chances and possibilities that the changing political context could mean, people with disabilities put pressure on the future leaders of Spanish politics to resolve the model of weakening, paternalistic protection in practice under the dictatorship³ and to ensure the incorporation of people with disabilities into a society of citizens.

At the end of the year 1976, people with disabilities started public mobilisation and the following demonstrations became something like a regular institution that accompanied political change until the end of the transition period. Activists used the media to make their demands public; they took part in street protests convened by neighbourhood associations, political groups or by groups of disabled people; they participated in hunger strikes, sit-ins inside churches and administrative buildings⁴. The longest sit-in took place in the head offices of the Rehabilitation and Re-education Service for the Physically and Mentally Disabled (SEREM) in Barcelona, lasting a total of 45 days during the winter of 1978 ⁵.

Protest by people with intellectual disability and their families in 1978. On the banner that led the march “Subnormal people demand a place in society” could be read and behind it, “a silent, marginalised minority shouts from its solitude... Justice! Social justice!” (Source: Asociación por la memoria histórica del Partido del Trabajo, Archivo Histórico, http://www.pte-jgre.com/fotografias/galeriafotografiasindice.htm)

Some of the activists who participated in these mobilisations belonged to the formal associations created under the former dictatorship, but most of the participants came from the new grassroots movements, which gained strength especially by people active in the field of physical disabilities. This movement demanded the participation of people with disabilities in political decision-making and, moreover, required actions and steps towards integration regulated within the general legislative framework⁶.

People with disabilities wanted architectonic barriers to be removed and public transport and housing to be adapted; they wanted to finish protected employment and guaranteed access to the free labour market; they wanted an unemployment benefit for those who could not find work and the inclusion into the Social Security System. They also requested to abolish SEREM because it had already been proved to be inoperative and it was in itself, due to its specificity, a marginalising element of politics. They defended that their needs should depend on an overall action by the government, funded by the General State Budget.

These mobilisations were not always well received by the public authorities. Some actions were not authorised and there were confrontations between activists and police. Additionally, supporters of people with intellectual disabilities had to face the criticisms that they were seen as manipulating and politicising disabled people. Supporters argued that these criticisms had to do with the general misconception that persons with intellectual disabilities were not able to make their own decisions and simply enjoyed a civil right recognised by the new constitution⁷.

People with physical disabilities from the “MinusválidosUnidos” group demanding adapted public transport during a neighbourhood protest organised in Madrid in 1976 (Source: Triunfo, nº 715, 1976)

In spite of the critic and the obstacles activists had to face, their direct forms of action showed an immediate effect. Political parties became interested in disability rights and included demands for emancipation in their campaigns for the first democratic elections in 1977. However, once the elections had taken place subsequent political implementation was missing which led to the impression that the interest in disability rights had been functionalised in order to win votes more than to change institutional settings.

The new Constitution, passed in the winter of 1978, included an article that established the public authorities’ obligation to give specialised attention to and ensure the same rights for people with disabilities that was granted to all citizens:

“The public authorities shall carry out a policy of preventive care, treatment, rehabilitation and integration of the physically, sensorially and mentally handicapped who shall be given the specialised care that they require, and be afforded them special protection in order that they may enjoy the rights conferred by this Title upon all citizens” (art. Nº 49).

Again, the positive discrimination implied by this article was not well received by all people with disabilities. If the demand for equality fixed in the Constitution really included “all” Spaniards, why was it necessary to add a specific article of this type?

The same year the Constitution was passed, Ramón Trías Fargas – a Catalonian Member of Parliament and father of a child with Down syndrome – convinced the Parliament to create a special committee to analyse the situation of people with disabilities. This technical report should be used as a basic document for a draft legislation on disability. The committee’s work, which was advised by the formal associations (with proposals that implied less radical changes than those demanded by the base groups), culminated in the promulgation of the first Law on Social Integration of the Disabled in 1982 (Ley de Integración Social del Minusválido, popularly known as LISMI). The law was strongly influenced by the 1971 and 1975 United Nations’ declarations on the rights of disabled persons.

The LISMI was a law with a specific welfare approach, which aimed at the improvement of rehabilitation and social services. Beyond this, it laid down integration measures directed at creating equal opportunities for people with disabilities. For instance, the law obliged public and private companies to include a minimum percentage of people with disabilities in their staff; it stipulated their access to free education in the ordinary education system; and established home-based care programs in order to avoid closed institutions.

Although this was the first time that subjective rights for people with disabilities were established, the law was criticised from its beginnings. Activist considered that it was still a “discriminatory” measure and that it lacked funding to carry out effectively the proposed integration measures and services. The fact is that LISMI did not manage to accomplish all its aims and it became necessary to develop additional regulations in the following years to make the law more effective. However, despite its shortcomings this law -applicable until 2013- laid the foundations for the development of the future public disability policies⁸.

The advances made during the democratic transition period did not cover all expectations formulated by the people with disabilities. However, important changes were achieved that showed positive effects in their everyday lives. Especially significant for this historical experience was the insight that working together and speaking with a united voice is extremely important in order to increase influence in the decision-making spheres.

(∗) Activism by people with disabilities is one of the issues explored by the Group of Social Studies of Medicine (University of Castilla-la Mancha) in a three-year national research project aimed at analysing discourses on disability and socio-cultural changes during late Francoism and the Spanish democratic transition. [Project title: El discurso acerca de la discapacidad en el tardofranquismo y la transición y su influjo sobre el proceso de cambio socio-cultural en torno a la normalidad corporal y mental. Funded by the Ministry of Economy and Competitiveness (Spain)]

Recommended Citation:
Mercedes del Cura (2017): The Future We Want: Demanding Rights for People with Disabilities during the Spanish Democratic Transition. In: Public Disability History 2 (2017) 1.

Footnotes:
[1] Sánchez León, P. (2011), Radicalism without representation. On the character of social movements in the Spanish transition to democracy. In: Alonso, G & Muro, D. (eds), The Politics and Memory of Democratic Transition. The Spanish Model. New York-London: Routledge, pp. 95-11. ^↩
[2] Del Cura, M. & Martinez-Perez, J. (2016), From resignation to non-conformism: association movement, family and intellectual disability in Franco’s Spain (1957-1975), Asclepio, 68 (2), p. 149. doi:http://dx.doi.org/10.3989/asclepio.2016.21. ^↩
[3] Martínez-Pérez, J. & Del Cura, M. (2015), Bolstering the greatness of the Homeland. Productivity, Disability and Medicine in Franco’s Spain (1938-1966)”, Social History of Medicine, 28 (4), pp. 805-824. ^↩
[4] Bregain, G. (2013), An entangled perspective on disability history: the disability protests in Argentina, Brazil and Spain, 1968-1982.In: Barsch, S.; Klein, A. & Verstraete P. (eds.), The Imperfect Historian. Disability histories in Europe. Frankfurt am Main: Peter Lang, pp. 133-153. ^↩
[5] Guillén, A. (1994), La Participación. In: Vilà i Mancebo, A. et al., Crónica de una lucha por la igualdad: apuntes para la historia del movimiento asociativo de las personas con discapacidad física y sensorial en Catalunya. Barcelona: Instituto Guttman, pp. 63-69.^↩
[6] Giralt, F. (1978), Los minusválidos. Barcelona: Dopesa; colección “Los Marginados”.^↩
[7] López Iglesias, J. (2014), 50 años con las personas con discapacidad intelectual. Madrid: Plena Inclusión.^↩
[8] Moreno Bonilla, J. M. et al (2012), 30 años de la LISMI: un recorrido de inclusión. Madrid: CERMI ^↩

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Winter Break

While a cold wind is blowing over Europe, football players as well as brown bears hold their annual winter sleep, Christmas trees are being burned and many are trying to lose some weight after the New Year celebrations, the Public Disability History blog will be silent for some weeks. From the beginning of February we will be back with more refreshing reflections on the many connections that can be made between disability, history and the public. Do not hesitate, however, to contact us in the mean-time in case you would like to contribute. We’ll add you to our annual schedule and reserve one of our precious slots!

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Euthanasia enthusiasm

by Jan Grue

I was never a great admirer of D.H. Lawrence, even as a teenager. I read Lady Chatterley’s Lover, probably expecting some sort of frisson, some Vitalist thrill, even though the book could hardly carry the same impact in the 1990s as it had on its original publication. That thrill, however, depends entirely on one’s capacity for literary identification – with Lady Chatterley’s erotic awakening, or with Mellors the gamekeeper’s forceful physicality.

Unfortunately I was a wheelchair user, and so instead I couldn’t help identifying, on some level, with Clifford Chatterley. Unlike any other character I’d encountered in the Western canon, he even used a power wheelchair – inexpertly built and prone to breakdowns, but clearly a distant ancestor of the Permobil Trax chair I used – and still use – every day.

Clifford Chatterley is not what literary scholars would call a round character. He is perhaps best understood as a cobbled-together set of neuroses, hostility, and bitterness, the very model of what Tobin Siebers critiqued as the Freudian caricature of a disabled person: Wrapped up in narcissistic anxiety over an equally damaged body and soul.

I reacted to Lady Chatterley’s Lover more or less instinctively, with visceral unease, while reading it in my teens. On the level of comprehension and analysis, things fell rather more solidly into place a few years later, when I came across John Carey’s book The Intellectuals and the Masses. There, Carey quotes the following words from Lawrence’s letters (written in 1908, a full two decades before the publication of Lady Chatterley’s Lover):

"If I had my way, I would build a lethal chamber as big as the Crystal Palace, with a military band playing softly, and a Cinematograph working brightly; then I’d go out in the back streets and main streets and bring them in, all the sick, the halt, and the maimed; I would lead them gently, and they would smile me a weary thanks; and the band would softly bubble out the ‘Hallelujah Chorus’."

Historical colour lithograph of the Crystal Palace in London,
overlooking a vast park with picknicking groups.

There it is: An uplifting, well-orchestrated take on eugenically motivated genocide. Clifford Chatterley, it seems, got off easy. It may be because he was injured in the war, not burdened with a congenital impairment.

John Carey’s point is not that D.H. Lawrence was unique in holding murderously eugenicist views, it is rather that he was fairly representative of his time and milieu. A blog post is not a sufficient format for discussing that history in detail; here, I will merely draw some attention to the enthusiasm of his position, the softly bubbling music that accompanies the march toward the death chambers. And will point this out because of a recent spate of media stories with a similarly enthusiastic view of the deaths of people with impairments and serious illnesses.

Many of these stories have already been subject to some controversy, with disability activists and advocates of euthanasia or assisted suicide joining the debate. The two stories I will refer to here are readable in different ways, depending on one’s politics. My interest in them is chiefly centered on the intersection of aesthetics and morality – in how a certain kind of death is presented in the media as both beautiful and just, and therefore perhaps also necessary.

The first story can be read here: http://www.usatoday.com/story/news/nation-now/2016/09/22/following-last-dance-prom-wisconsin-teen-jerika-bolen-dies/90855656/

Jerika Bolen, a 14-year old girl “followed through on her decision to enter hospice and end an arduous, lifelong fight against Spinal Muscular Atrophy Type 2, an incurable and progressive disease that racked her body and brought continual pain”. It should be noted that SMA type 2, Bolen’s diagnosis, is generally consistent with a life expectancy well beyond late middle age.

In the article linked to, as in multiple other interviews and media texts, Bolen is presented as a rational agent making a rational choice – death over life – because of circumstances that, ultimately, cannot be changed. In the media optics, social and economic factors belong to these immutable circumstances. The “fight” cannot be won by living, only by dying. A celebratory tone ran through many of the news items that covered Bolen’s last few months. The stress was put on her “bravery” and on her autonomy.

Another story, perhaps even more striking because of the accompanying images, can be read here: http://www.chicagotribune.com/news/nationworld/ct-final-party-assisted-suicide-20160811-story.html

Betsy Davis, a “41-year-old artist with ALS, or Lou Gehrig's disease, held the gathering to say goodbye before becoming one of the first Californians to take a lethal dose of drugs under the state's new doctor-assisted suicide law for the terminally ill.” The images showing her saying her goodbyes, surrounded by friends and family, are in their way even more striking than the portraits of Jerika Bolen. Death not only represents a victory, but a cause for celebration.

This is how the case for assisted suicide is put in the age of individual rights: As a triumph of autonomy, a celebration of self-chosen death. There are myriad differences between Bolen and Davis, between their conditions, their decisions, ultimately, of course, between their lives. In the media, however, a number of distinctions and differences collapse. The story remains the same, however, and can be paraphrased as follows: In the struggle against disability and disease, death can be a victory.

Euthanasia and assisted suicide are not, currently, framed by their advocates as state responsibilities or as arenas for state agencies. There will be no lethal chambers as big as the Crystal Palace. Death is a private matter, subject to the autonomous decisions of private citizens. In a word, it has been privatized.

There are distinctly national and regional approaches to the matter of voluntary death, ranging from the libertarian assisted-suicide approaches of the Western United States to the more paternalistic, euthanasia-inflected approach of Belgium. Generally, however, arguments in favor of the facilitation of such death are contingent upon an atomistic conception of “voluntary” – divorced from political structures, economic conditions, and social attachments. Divorced, in short, from nearly everything that shapes the reality of living with impairment or illness. While the band is softly bubbling the Hallelujah chorus, benefits are being cut and safety nets removed all over the developed world. There is every reason for disability scholars, advocates, activists, and for disabled people, to be wary of the current media enthusiasm for euthanasia and assisted suicide.

Recommended Citation:
Jan Grue (2016): Euthanasia enthusiasm. In: Public Disability History 1 (2016) 22.

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